Lars Christopher Gillberg, (born 19 April 1950) is a professor of Child and Adolescent Psychiatry at Gothenburg University in Gothenburg, Sweden, and at the medical college of St George's, University of London]] in Tooting in south London. He has also been a visiting professor at the universities of University of Bergen, New York, Odense, and San Fransisco.[1]

Gillberg has become known internationally for his contributions to various pioneering research projects into the genetics of autism. [6] In 2003, a French and Swedish research team at the Institut Pasteur psychiatric departments, University of Paris, led by Thomas Bourgeron, Marion Leboyer and Gillberg, made the first discovery of precisely identified genetic mutations in individuals with autism. The team identified mutations altering two genes on the X chromosome which seem to be implicated in the formation of synapses (communication spaces between neurons), in two families where several members are affected. Previous studies, such as the Paris Autism Research International Sib-Pair Study (PARIS), coordinated by Gillberg and Marion Leboyer, have more generally associated the X chromosome regions with autism. The 2003 break-through indicated the location of the mutation to be on the NLGN4 gene and the NGLN3 gene. The mutation prevents a complete protein from forming and is inherited from the mother.[7]

In Sweden, Gillberg is also known for his concern about the confidentiality of medical records and his role in a related controversy.

Gillberg played a leading role in developing the concept DAMP(Deficits in Attention, Motor control and Perception) in the 1980s. The concept was based on previous attempts to define purely diagnostic criteria for MBD(Minimal Brain Dysfunction) independent of any hypotheses about etiology.[10] Around 1990, DAMP had become a generally accepted diagnostic concept in the Nordic countries.[11] When DSM-IV appeared in 1994, DAMP became a somewhat redundant term, since DAMP is essentially equivalent to ADHD in combination with DCD (dyspraxia) as defined by DSM-IV.[12][10] (In the WHOsystem, it would be classified as a hyperkinetic disorder in combination with a developmental disorder of motor function.) About half of the children with ADHD also have DCD. [13]
Gillberg began to study DAMP in the late 1970s, when it was still called MBD. Since then, he has published around 80 papers on DAMP, ADHD and related conditions.

One of Gillberg's early research projects, the Gothenburg study[14], has become the center of a heated controversy in Sweden[15]. The controversy concerns the question to what extent the principle of public access, which in Sweden supports transparency in publicly funded activities, can be applied to sensitive data collected in medical studies involving human subjects. [16][17]

Beginning in 1996, pediatricianLeif Elinder criticized Gillberg's research and alleged that the numbers reported by Gillberg were made up.[18] Elinder became associated with the sociologistEva Kärfve at Lund University, whose research had been devoted to early witch hunts and medieval myths in Europe. They, along with others associated with the Church of Scientology, coordinated their criticism and Kärfve wrote a book, published in 2000, rejecting most of the research on DAMP, and especially Gillberg's.[19] Other psychiatrists and neuroscientists in Sweden defended the Gillberg group and argued that Elinder and Kärfve had crossed the line from scientific criticism to personal attacks and vilification.[20][21] The conflict escalated further in 2002, when Kärfve and Elinder wrote separate letters to Gothenburg University, accusing the Gillberg group of scientific misconduct.[22][23] The accusations were investigated by the Ethics Council and dismissed as baseless.[24][25][26]
Elinder and Kärfve also demanded access to the original research material for the main DAMP studies. Under a section of the Swedish basic law that grants citizens access to government documents, Elinder and Kärfve were given full access to the documents by an administrative court.[27][28] The University, the Gillberg group, and the participants of the study were stongly opposed to this decision, on the grounds that the material contained medical records and other sensitive information, and that the participants had been promised full confidentiality.[27][28][29][30] A higher court decided that neither the participants, the researchers, nor their institution, were formally entitled to appeal the decision.[31] When all legal avenues had been exhausted, two of Gillberg's coworkers and a university administrator destroyed the 12–27 years old research material. In the legal aftermath, Gillberg and the Rector of Gothenburg University were found guilty of "misuse of office" for not complying with the administrative court's decision.[32]

The court's decision to grant the two critics access to the data was very controversial. When the study participants were contacted by Gillberg and asked if they would be prepared to have the data released, all but one family refused.[32] Because of that, and the promise given to the participants as a precondition, Gillberg and the other researchers felt obliged not to turn over the personal data.[33] After the verdict, Johan Munch, chairman of the Central Ethical Review Board of Sweden declared that in Swedish legislation, the Principle of Public Access[34] is incompatible with promises of confidentiality in medical research, and that the Central Ethical Review Board therefore no longer approves such promises.[17] According to Martin Ingvar of the Karolinska Institute, medical researchers in Sweden would be forced to change the current practice because of the verdict. Ingvar told media that medical studies in Sweden must now adhere to a strict anonymization encoding, even in extensive studies like Gillberg’s which contain large amounts of clinical material collected over long periods of time, in spite of the increase in cost and the larger margins of error.[17] 267 Swedish doctors signed a letter in support of Gillberg's decision not to hand over the data.[35] Elisabeth Rynning, a professor of Medical Law at the University of Uppsala questioned whether the court had been fully aware of the relevant laws. Access to these kinds of records may only be granted for the purpose of research or for the collection of statistics. Elinder had not stated any such purpose in his application, and Kärfve had only argued that the material would be useful for her research, not that it would actually be used in a research project. She was in fact not allowed to use the material in her research project, since that would have required a previous approval by an ethics committee. There was also the problem that Elinder and Kärfve requested the material as private citizens, while at the same time stating that they needed it in their professional capacities. If they had requested the material as representatives of their employers, the court would not have jurisdiction. Finally Rynning questioned how the court could decide that no one would be hurt, as the law requires, if Elinder and Kärfve were given full access to the data. Several participants had testified to the court that they would be deeply offended and hurt if Elinder and Kärfve could read their medical records.[36]

In 2003, a bill was introduced in the Swedish parliament, Riksdagen, due to the secrecy issues raised during the trial that granted the two private individuals access to sensitive personal data.[37] In 2004, a new law on ethical review of research involving humans was introduced. Changes were put in place in order to strengthen the protection for human subjects participating in medical research and to expand the scope of the ethical councils. Additional changes to bring the Swedish legislation closer to the European Commission directive are presently under review.[38]

The files with the personal data collected during the Gothenburg study no longer exist. Two co-workers and a university administrator shredded the files. In defense of their their action, the two researchers (both chief physicians at Sahlgrenska University Hospital), referred to the promises of confidentiality that had been issued to the subjects of the study and the letters of objection that had been received from the families that they did not want their personal data used or shared with the private individuals. They argued that turning the files over would have exposed the researchers and the university to potential lawsuits from the subjects for failing to honor a written agreement.[39]
They were convicted and fined for destruction of government property.[32]

In July 2005 the lower criminal court in Gothenberg upheld the right of Kärfve and Elinder to see any data from the Gothenberg study still held by the University. The court fined Gillberg for "misuse of office". [40].

Letter to the Swedish Chancellor of Justice The Swedish Child Neuropsychiatry Science Foundation. Letter detailing the actions by Christopher Gillberg opponents, the involvement of public figures and the media, and the legal process.